Traumatic Brain Injury and Post Concussion Syndrome For traumatic brain injury (TBI) and post concussion syndrome (PCS).


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Old 02-19-2012, 11:58 AM #1
ClumsyCharlie ClumsyCharlie is offline
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Default Neurologist Meeting - Tomorrow

Hey, I was just wondering what a neurologist consultation would involve as I am meeting mine for the first time tomorrow afternoon. I'm incredibly nervous, which I think is making me feel worse. I'm so scared that he won't believe me. Why would a stranger believe me when some of my closest friends and family don't?!

Any advice would be great, thanks
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Old 02-19-2012, 12:40 PM #2
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Default Hi Charlie

I know this can be nerve racking. Try to think of this as a good thing to happen. There are alot of good neuro docs out there. I will pray you find a good one.
One of the things you can do is bring a journal, or typed page of all your symptoms, duration, etc. This shows the doctor you are truely documenting what happening to you. Most doctors I go to, I do this at every appt. I even catch them up with each other. I had a great neruo surgeon, he had the best bed side mannor of all of them, you never know really untill you engage him in conversation. I hope and pray your appt. goes well, and that he is a caring doctor that listens to you. ginnie
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Old 02-19-2012, 01:17 PM #3
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You should definitely bring a list of things you want to discuss with him/her. Maybe a list of symptoms your experiencing and any questions you want to ask. I have to do this or i wont remember what to say when I get there...which makes the whole appointment pointless.

Good luck.
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What happened: I was randomly assaulted from behind in June of 2011. I was knocked unconscious for an unknown amount of time (less than 30 minutes) and have no memory of the event. CT scan showed contusion and hematoma of the left frontal lobe. I spent 3 days in the hospital. Diagnosed with Post-Concussion Syndrome in September 2011. Currently have Medicaid, Medicare and SSI.

Current symptoms: Brain fog, mild memory issues, problems with spontaneity, occasional spacing out, word finding difficulties, tinnitus in right ear and some other things that I can't explain.

Life after the brain injury: 4 years after the injury, I'm engaged to my beautiful girlfriend of 5 years, I'm the CEO of my own business, Notorious Labs, I've taught myself how to program complex games and apps which is a feat I never thought I'd accomplish and now live a semi-normal life with very mild PCS symptoms.

Slowly but surely regaining my life back.
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Old 02-19-2012, 01:17 PM #4
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Ditto on the notes! I took a list of symptoms with me when I went to the neuro. When I went back for the second visit I had updated the list of what I was still having issues with and what had improved.

It helps too if someone is with you that knows you well who can document what you are saying-the hub went with me and he was able to fill in the blanks where I couldn't.

Best of luck!
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Old 02-19-2012, 01:21 PM #5
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Prepare for the best, but be prepared for the worst. Be organised and bring a list of symptoms, timeline etc so that if your neurologist is good and knows what they are doing they have a chance to give you good advice.

However from my experience and from what I've seen on this forum, many neurologists are either shockingly ignorant or actively unhelpful. The good news is that there's not that much they can do for you anyway and most of the useful advice they could give can be found on this forum, mainly rest (including cognitive rest), good nutrition, making your environment less stimulating, making sure you get no more impacts, minimizing stress/anxiety, and getting your head around any lack of insight into your symptoms that you may have.

If you have any questions about any of these things I have found that this forum is the best place to find the answers. So healing doesn't all hinge on how your meeting goes tomorrow. Good luck!
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Old 02-19-2012, 01:35 PM #6
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One more thing - you may feel differently and not like being 'labelled' but the most useful thing I got from my neurologist was a diagnosis. This gave me legitimacy with my employer, friends and family who can tend to not understand unless they hear it from someone with 'authority' and are otherwise liable to see you as a lazy hypochondriac.

I'm pretty sure my neurologist had never heard of Post-Concussion Syndrome and only diagnosed me when I emailed him a journal article about it. But I'm glad he did!
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Old 02-19-2012, 04:51 PM #7
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Default Thanks!

I've been writing my list, and I've given it to my mum (who's agreed to drive me to the hospital and come in with me - despite not totally believing that there is something wrong with me. I do consider this a step forward in her acceptance)
Ideally I would take my boyfriend who has been supportive throughout, and helped me write my A4 page of symptoms.

I'm mostly going for the diagnosis, I'm sick of people saying 'maybe you need glasses? You get headaches from straining your eyes.' Or 'Are you sure you've drunk enough?'

Thank you Everyone! I will let you know how I get on tomorrow! x
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Old 02-19-2012, 05:22 PM #8
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Okay, look forward to hearing back from you.

BTW, I sent you a PM awhile back asking if you were still having trouble with brain fog while playing video games or watching TV.

Is that a problem for you still?
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What happened: I was randomly assaulted from behind in June of 2011. I was knocked unconscious for an unknown amount of time (less than 30 minutes) and have no memory of the event. CT scan showed contusion and hematoma of the left frontal lobe. I spent 3 days in the hospital. Diagnosed with Post-Concussion Syndrome in September 2011. Currently have Medicaid, Medicare and SSI.

Current symptoms: Brain fog, mild memory issues, problems with spontaneity, occasional spacing out, word finding difficulties, tinnitus in right ear and some other things that I can't explain.

Life after the brain injury: 4 years after the injury, I'm engaged to my beautiful girlfriend of 5 years, I'm the CEO of my own business, Notorious Labs, I've taught myself how to program complex games and apps which is a feat I never thought I'd accomplish and now live a semi-normal life with very mild PCS symptoms.

Slowly but surely regaining my life back.
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Old 02-19-2012, 06:04 PM #9
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Here's a list from Mayo Clinic of things to do to prepare for your appointment as well as suggested questions to ask your doctor:

http://www.mayoclinic.com/health/pos...ur-appointment

I actually printed this page out with me and took it to the appointment.
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mTBI and PCS after sledding accident 1-17-2011

Was experiencing:
Persistent headaches, fatigue, slowed cognitive functions, depression
Symptoms exacerbated by being in a crowd, watching TV, driving, other miscellaneous stress & sensory overload
Sciatica/piriformis syndrome with numbness & loss of reflex


Largely recovered after participating in Nedley Depression Recovery Program March 2012:

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Eowyn Rides Again: My Journey Back from Concussion

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Old 02-19-2012, 06:26 PM #10
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Default Very Good charlie

Good luck at your appointment. You writing down all of that is going to help your doctor. Let us know what happens. We care about you. ginnie
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